Martin from Macedonia - Dx Jan 2015

[Olga]

Hi Martin,
hope for the good CT scan results.
Do you have a pathology report? It looks like the tumor was completely resected and there was no other tissue (bone or nerves) involvement. Do you have the pathology report? They make frozen tissue sections to see if there is always some margin of the healthy tissue around of the tumor mass. (HP results no.1092496?)

[MartinBube]

Hi Olga

I got the MRI report on the head and neck that did not showed anything. CT on Chest and Abdomen first looks of the doctor before looking in details and writing a report was that she does not see anything
Excellent news and hope deeply that it will stay that way but now I need to see oncologist, seems that with this she will not give me any chemo, probably only radiotherapy but will see on Monday.

I'm sending tomorrow all results to UK for second opinion and if necessary I will go there

talked to a girl today that has passed through this 5 years ago but she was not exactly sure if she had ASPS or other sarcoma type however it was good to hear what she passed through. She did had chemo right after surgery.

this is the pathology finding

"PROVISIONAL REPORT: ALVEOLAR SOFT PART SARCOMA
Stage 1A (IF N0 M0)
T1b N? M?
DESCRIPITION OF THE TISSUE:
Post-operatively the oval fragment is weighing 10gr and has a size of 3x2.8x1.8 cm. The consistency is medium-hard and small nodules can be seen in a part of it. The colour is white to grey. In the periphery there is connective and lipid tissue and in small areas part of a muscle.
MICROSCOPY:
The tumor is built of large, uniform Epithelioid-like cells with rich eosinophilic and granulated cytoplasm. They are arranged in solid nests and alveolar structures, parted with gentle connective and vascular channels (tracks). Also there are rough-looking collagen septa with bigger blood vessels. There is a relatively clear demarcation from the surrounding structures of lipid and muscle tissue, but in certain areas there is evident infiltration of small and big tumorous nests in them. The tumorous population has relatively monomorphic big nuclei and some of them contain single eosinophilic nucleoli. There are some rare cytoplasmic nucleic inclusions. In certain zones there are mildly atypical and polychromatic nuclei. There is rarely seen atypical single mitosis (up to one / 10HPF). In the peripheral parts and the septal structures of the tissue vascular tumorous invasion can be seen.
The histochemical analysis with standard colouring is PAS negative.
Immunohistochemical analysis profile: NSE (+), Vimentin (+/- focally), Actin (+/- focally), CD117 (+/- disperse single cells), CD30 (-), CK7 (-), CK AE1/AE3 (-), CKWS (-), EMA(-), RCC (-), PLAP (-), Desmin (+/- focally), Synaptophysin (-), Chromogranin (-), S-100 protein (-), Melan A (-) and HMB45 (-).
Ki-67 shows variable proliferative index between 2% and 6% with a median value of 4%.
According to the described morphology and the above analyses the findings are described as alveolar soft part sarcoma.


thanks
Martin

[Olga]

Good quality report, they even did an Immunohistochemical analysis profile. I did not find the info re. margins. It is going to be your own choice re. redo surgery but get the advice of the sarcoma skilled surgeons - did you include the surgery and pathology reports with other scans for the expert opinion request you sent?
But they found vascular tumorous invasion at the periphery so it means that you are at risk of the distant metastasis and even if there are none found at the moment, you will need to be very vigilant with the follow up scanning for life.

[MartinBube]

Hi Olga,

Yes, I did send everything I have. I will be translating the weekend all I have got additionally and I will send that also. I will probably go on another surgery.

Yes the invasion part concerns me a lot but the pathologist says that even that part is seen since there was healthy tissue round it however yes I'm very sure that I'll need to be very vigilant.

Maybe radiotherapy or chemo might help at this moment and I'm sure in a short time to have some answers from abroad from people with experience in this that will suggest the therapy.

I'm hoping very much that I will be able to go to meet prof. Ian Judson in the London Royal Marsden hospital as it seems he is very educated regarding the ASPS.

I might also travel abroad next week to do a PET Scan but nothing fixed yet

thank you
Martin

[Olga]

Martin, the value of the PET scan in your situation is close to zero - I would say do not waste your money and time, save veins/kidneys also. PET is unable to detect any smaller ASPS tumors due to their slow metabolic rate so no increased accumulation of tracer there - unless the tumors are big and active. It is common that ASPS patients with known small mets have the PET scan that finds nothing. And if the tumors are not seen on the CT scans there are no big ones. In your case you are trying to find if you have any small/microscopic mets.
Re. invasion. I was talking about the vascular invasion that is not the tumor invasion per se but rather the tumor had the blood vessels grown to connect into the body's blood system. The blood vessels themselves are normal healthy tissue but they feed the tumor and it could have disseminated trough these blood vessels distantly - wherever the blood flows. Usually the lungs trap most of the floaters so this is the reason ASPS most often metastasizes to lungs.

[Bonni Hess]

Dear Martin,
I had posted a response earlier but it somehow got lost in Cyberspace Thank you for so promptly posting your preliminary good news scan results. I am so happy that the scan results showed no mets in any of the scanned areas which is very good and encouraging news . However, I agree with Olga that based on the concerning observation that "vascular tumorous invasion can be seen in the peripheral parts and the septal structures of the tissue" you will need to be very vigilant in having regular and adequate scans including chest/abdominal/CT scans every three to six months, a brain MRI once a year (NOT just a brain CT which is inadequate to show brain mets at the smallest most treatable size), and a full body bone scan once a year to pro-actively monitor your disease because unfortunately ASPS can and does metastasize, and most typically it metastasizes to the lungs first. I will be anxiously awaiting your next update regarding your and your oncologist's decision regarding additional surgery or radiation to the primary tumor site. I am perplexed about your possible plans to travel abroad for a PET scan since you just had very complete scans, and PET scans are notoriously inaccurate and unreliable and I don't know what further information a PET scan could provide for you. Some doctors recommend PET scans because they can show possible tumor activity, but they are not very accurate for ASPS and there can be false positives as we experienced when a PET scan erroneously showed tumor activity in Brittany's resected brain tumor bed which was inaccurate and resulted in an unnecessary surgical procedure.
Take care Martin,celebrate the good news of your encouraging scan results, and keep in touch as you are able.
Sharing the great joy and relief of your good scan results with happy hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[MartinBube]

Hello Everybody

this is my latest update. went in Turkey for a consultation and second opinion and the results are:

- additional surgery will be needed to ensure much more negative margin since the closest to my first surgery is 1mm
- afterwards there will be another pathological report of the removed tissue
- radiotherapy if needed

the doctors said that it was a mistake that a biopsy was not done in order to ensure bigger margin even with the first surgery. I'm not sure if this is a mistake that will be very bad and if the first surgery just allowed spread of the tumor although according the reports there is negative margin but not too far away from the bad tissue. not sure how that works

probably next week I will do the additional surgery

regards to you all and lets Stay STRONG in the fight

[D.ap]

Hello Everybody

this is my latest update. went in Turkey for a consultation and second opinion and the results are:

- additional surgery will be needed to ensure much more negative margin since the closest to my first surgery is 1mm
- afterwards there will be another pathological report of the removed tissue
- radiotherapy if needed
the doctors said that it was a mistake that a biopsy was not done in order to ensure bigger margin even with the first surgery. I'm not sure if this is a mistake that will be very bad and if the first surgery just allowed spread of the tumor although according the reports there is negative margin but not too far away from the bad tissue. not sure how that works
probably next week I will do the additional surgery

regards to you all and lets Stay STRONG in the fight

Hi Martin

Thank you for keeping us in your info and circle.
I am glad to hear that you are able to keep asking for answers in your care as that is big in my eyes. It sure would be easy to just act like the ASPS wasn't there and not be proactive in educating yourself and waiting till it would be too late in addressing health issues with this sarcoma. It has a way of sneaking up on us.

I've highlighted your forum post and have questions if you don't mind answering them. Please answer what's comfortable for you.

The additional surgery will be performed by an orthopedic surgeon ?
His reason for redoing surgery is only 1 mm of outside margins were clear and he and maybe your oncologist want to see more?
Could there be close encounters of some very important nerves that would possible impose on your quality of life and livihood.

As far as the surgery spreading the cancer it sounds to me that the surgeon was very careful in not disturbing the encapsulated tumor.

With regards to the radiation of the surgery area there has been discussion as to the pros and cons of radiating this particular sarcoma

Here in the states we have access to a radiation doctor specific to cancer. He gave us a 15-20% chance of reoccurrence to our upper thigh tumor removed with about 2mm negative margins . The downside was the radiation could cause a secondary cancer Sarcomas generally have to be hit with more than your average radiation dose if that's the way a person and their doctor chooses to treat it.

Talk to your primary oncologist.

Let us know if we can help

We are all here.

Love
The Debbie P family

[MartinBube]

Hello Debbie

here are my answers

The additional surgery will be performed by an orthopedic surgeon ? Yes it will be orthopedic surgeon

His reason for redoing surgery is only 1 mm of outside margins were clear and he and maybe your oncologist want to see more? the reason for redoing is only that the closest margin is 1mm

Could there be close encounters of some very important nerves that would possible impose on your quality of life and livihood? yes there might be, but somehow I'm willing to take the risk if that is what it takes

thanks
Martin

[Olga]

Martin, the problem with ASPS is not the local recurrence - it happens too but can be redone - but the distant dissemination that happens from the primary tumor before it was removed. The improved local control may not affect it. You really need to evaluate the planned redo surgery to see what are expected functional losses, may be get a second opinion from the ASPS expert like Pf.Judson in UK.

[MartinBube]

I will for sure try to see him. Already have tried to contact him through my cousin in the UK. I will translate all of my reports in English officially and will try to go there.

Only thing that bothers me is that I feel like a sitting duck, waiting until the next scan to see what happens. The fact that there is nothing that is given preventive somehow I take it very hard at times.

I got in touch also with MD Anderson in the USA and they also say that they do treat this type but for now this is still far away as a decision since it will take a lot of resources.

I would like to send a sample of a paraffin block tissue to a specialized lab that can do all test and citogenetical analysis that might help future treatment just do not know where to, USA which one EU also which one.

thanks to all of you for the help

[Olga]

Martin - we all feel like sitting ducks, waiting until the next scan to see what happens. Loss of control over your life is a hard blow to take, but then you realize that it is the same for all the people around us - they just assume they are in control over their lives when in reality it is just an illusion.
I am wondering what do you expect from "being treated at the MD Anderson in the USA". They do not really do anything different from anyone else, because after the correct Dx is done, most people are getting about the same treatment. The difference is in access to best surgeons/ablation drs/clinical trials/drugs - the best thoracic surgeon we found was in Germany, the best cryoablation dr we found was in Detroit, US (now he moved to Rhode Island close to Boston), the brain surgeon we had was excellent right here in Vancouver. The high level of radiosurgery - CybeKnife, GammaKnife - was found by our patients in many places in US and other countries. The money and insurance make a big difference. The treatments are often cheaper in Germany and Singapore and the quality is very high.
You can always get the official consultation from the big places like MSK or MDACC long distance, but it cost money, like few thousand dollars for a review. You can also read their published articles on the subject.
To keep you occupied - re. redo surgery. I also suggest you to read on the subject of the connection between the surgical stress and metastases, the articles like
http://www.ncbi.nlm.nih.gov/pubmed/25161958
http://www.ncbi.nlm.nih.gov/pubmed/23736890
http://www.ncbi.nlm.nih.gov/pubmed/21475023
to get an idea about it. The surgeon is the best sarcoma patients friend but you have to pick your friends wisely, it is a chess game as our surgeon Dr.Rolle from Germany said.

[MartinBube]

Hello Olga

thanks for your advises. I did spoke today with an orthopedic surgeon who has warned me on that topic regarding mets and second surgery. His conclusion is that a mistake was done with me since the beginning from point of view why was I at all sent to a plastic surgeon instead of orthopedic surgeon, however his conclusion was that although the plastic surgeon did not knew it was a malignant tissue has removed it well without cutting and causing internal bleeding too much. At the moment he is skeptic regarding additional surgery that can cause much more internal bleeding since it will require cutting healthy tissue.

He has advised me to sent sample immediately to AHK hospital in Vienna in order to ensure again that we are talking about the correct diagnosis and afterwards to decide on how to proceed.

I fiend of mine today forwarded me this www.gcmaf.se link in order to look at it. It is about how the body it self can help in the battle but not sure if any of you have come across this and if anyone has tried it.

thank you for the support

[MartinBube]

Hi everyone,

just got today another reading on my CT scans from another radiologist and there is only one thing that concerns me:

the radiologist here in Macedonia did see "cyst on the liver" with size 5mm with no recommendation

the radiologist in Turkey has written "lesion up to 7mm" also says that from the CT can not really say if it is a met or not. Suggest MRI on the liver with dynamic contrast.

As I read this today I got really pissed off that no one here said anything like this. I'll be going tomorrow to check when will I be able to do a MRI

really not sure what to think..

[Bonni Hess]

Dear Martin,
Thank you for the faithfulness of your updates. I agree with everything that Olga has said in her responses to you, and I share her concern about the wisdom and necessity of the proposed additional surgery to the primary tumor site, especially if there is already possible vascular invasion as indicated in the pathology report. Regarding your today's posting about the finding of a 5-7 mm. lesion on your liver, I definitely agree with the Turkish radiologist that a liver MRI with contrast should be scheduled as soon as possible to try to more definitively determine the nature of the lesion. Unfortunately, ASPS can and sometimes does metastasize to the liver, as per our experience with Brittany and that of several other patients on this Board. However it can be difficult to definitively diagnose as has been the case with Mario who is a patient who infrequently posts on this Board. If it is determined that your liver lesion is an ASPS met, it can Hopefully be successfully treated with Radiofrequency Ablation (RFA) which thankfully destroyed Brittany's liver met ten years ago. The determination as to whether or not RFA can be used depends on the size and the location of the met since RFA cannot be used if the lesion is too close to blood vessels. Time is of the essence if the lesion is determined to be an ASPS met since if it is too large ablation or resection may not be a viable treatment option. I share your frustration with the radiologist in Macedonia who apparently observed a 5 mm. "cyst on the liver" but did not make a recommendation about it. Unfortunately, based on our 13 and a half years of ASPS experience, this is too often the case with radiologists and oncologists who can be inexplicably and inxcusably negligent in noting and addressing suspicious lesions on scans until they become symptomatic which is why we always insist on personally reviewing the scans with the oncologist. My very best wishes are with you for a postive outcome to the liver MRI and that the lesion on your liver is determined to be a benign cyst or other benign growth, and I will be anxiously awaiting your next update. Take care and stay strong.
With special caring thoughts, healing wishes, and continued Hope,
Bonni